Elasti-Girl

Hi There, I'm Kris. I'm a quirky sort who loves silly jokes, sunflowers, music, divine interruptions and music. I am devoted to my nerdly, ginger-haired husband, our 3 living & growing kids, and missing our 1 Babe in Heaven. We journey together through this life, dancing to our own beat, while learning each step as my children and I are effected by a life-threatening & degenerative chronic illness called Ehlers Danlos Syndrome (EDS). Please look on the "What is Ehlers Danlos Syndrome" to the bottom right of the page to learn more about EDS. I believe I have been given this journey in order to over come it, and this is my story of how I get it done.

Sunday, April 1, 2012

I can see the sunshine much more easily today. I am reminded of how good it is to know that the sun is here, even when I can't see it through the clouds or the curtains I use to kick it out of my room so I can slink into the darkness of my bed in desperate search of refuge from the ickyness & pain swirling through my body. The sun is constant and warm and makes things grow colorful and healthy and what a blessing that is!

I finally found my appetite again about week after this last procedure. I have been increasing my meals slowly with green veggie juices, raw veggies, a little fruit (probably not enough), avocado along with oatmeal mixed with walnuts, boiled rasins & raw honey w/ a pinch of cinnamon (tasty!). I would really like to get a juicer and a better blender as it seems it might be easier to drink more nutrients than I am able to eat in a day. I am experimenting with ways to eat better, and give my body the best chance it can to heal & carry on. As for the "thing" that was taken out of me; I should find out next week what exactly it is. I'm honestly not terribly concerned about it, I've told the few that know about it that it was clearly the remnants my evil twin that was no match for me. The very idea of it possibly being cancer just fills me with a sensation that feels too big to fit into my body- that if this thing is indeed something like cancer- I'll just kick it's ass right out of me so fast that it will hardly be much of a detour. Regardless of what it is, something(EDS &/or evil twin remnants) is causing all of this trouble in my body and so this adventure of fighting it is already well on it's way. So far the Dr. hasn't given me any helpful information on how to feel better, stop losing weight and live, so I'm left to my own grand ideas (which is quite scary considering what I did to my evil twin before I was even able to hold my own head up!).

During my time convalescing this week, I had a heart to heart with my husband. He feels terribly that everything happened the way it did. He has decided to go to treatment for his anxiety & depression that he has been suffering through alone (I didn't know that he's been having symptoms of anxiety for sometime now- which makes me so sad). Being that he's not been able to find work that pays what he used to make (which wasn't a huge amount- he was a public school special education teacher- an amazing one at that!) is frustrating to say the least, but for a man who used to be the SOLE bread winner for his family, it only makes sense that he is struggling. We are also tweaking his diet to add more whole, raw veggie/fruit goodness to help him through. It feels awful that we have been on different planes for the last nearly 2 years as we've tried to protect each other from what we've been feeling, and in the end weakening our bond. We've always been like two puzzle pieces who fit uniquely together, and I miss that. I am so glad that he has chosen to help & take care of himself.

As for my Dad, I have decided that at least for now confronting him would be pointless. Several months ago he informed me that he had changed his life's philosophy to "I'm going to do what I want and I don't care what anyone thinks of it." When I had challenged him since then about things he has said/done to me or my children being hurtful, he told me that I need to just trust that he loves me and decide not to feel hurt. In the same conversation he told me that I need to be nicer to him and not disagree with the way he treats me- (um...ironysayswhat). So, this is the philosophy he's decided to adopt; I don't understand it, I don't respect it, but I need to accept it and go about my life in the healthiest way I can- spending less time with him.

So....back to the sun always being there. It's dark out my window at the moment, but I know the sun is shining on someone right now, just as it will on us again tomorrow. ..what a blessing. :) I hope you are being blessed today.

What is Ehlers-Danlos Syndrome (EDS)?

•Ehlers-Danlos Syndrome (EDS) is a group of heritable connective tissue disorders affecting about 1 in 5,000 – 10,000 (though I've heard up to 1 in 25,000 depending on the study). It is caused by faulty collagens. Collagens provide structure and strength to connective tissue throughout the body. Collagen is mostly found in skin, blood vessels, and internal organs; vascular structures (the walls of your veins & arteries), hallow organ structures (GI Tract, female reproductive organs, etc.) ligaments.

•There are six major types of Ehlers-Danlos Syndrome. The different types of EDS are classified according to their manifestations of signs and symptoms.

•Many EDS patients have so many signs and symptoms, it makes it hard for a doctor to diagnose this disorder; it effects many people in different ways so I can only explain my experiences with how EDS effects me.•There is no cure and no treatments to cure Ehlers-Danlos Syndrome, only treatments to try and alleviate symptoms.